The last few weeks of Jake’s therapy have been, um, challenging. Which is the nice word I use when life has been straight up impossible. Jake plateaued and then slid merrily backwards into gagging at food, saying “NO” to everything, choking on things he’s been eating for weeks. I almost called Becky and asked if we needed to take a break, when Jake must have realized that Mama had about had enough and changed things up again. (Aren’t small people wonderful at knowing when their parents are just about to snap?)
This week has been one “Woohoo!” after another in our house. Jake finally stuck his finger in something sticky and scary and, instead of whining and crying, calmly stuck his syrup-covered finger in his mouth and cleaned it all off. It has taken weeks and weeks to get there, but they all seemed to vaporize when I saw him just handle it all on his own. As if that wasn’t cool enough, at the park today, Jake sat on the sidewalk and played with the sand. Before his therapy began, I took him to that park and he turned into a screaming limp noodle at the feel of sand on his fingers. I grinned from ear to ear today when he picked up some sand, let it slide through his fingers, and then vigorously wiped his hands on his pants and started over. I was elated that even though he was nervous about it, he played with the sand anyway and just wiped it off by himself when he got stressed out. That is so huge!
The final amazing, wonderful, awesome, lovely (anyone wanting to critique my writing right now can shove it 🙂 ) thing that happened today was that all the scary blood tests, urine tests and other tests that necessitated me carrying around Jake’s poo in a bag for three days came back, in the nurse’s words, “Not scary or threatening”. I can’t even communicate how relieved I am! The lady that called me won my undying affection when I assumed aloud that since she was calling me to schedule an appointment, that Jake’s tests must have come back with not good results. She went and found a doctor who read Jake’s chart and told her it was okay to tell me that everything was fine. During my battle with cancer, I learned that waiting for test results can be harrowing and in ten years of serious health problems this was only the second time that the person calling from a doctor’s office decided to be an actual human being and set my mind at ease. That woman deserves a medal, a cruise to the Bahamas, and a lifetime supply of chocolate chip cookies.
Wow, I love having so many good things to write about all in the same week! Oh! I almost forgot that Becky pulled some serious strings and we having Jake’s physical therapy evaluation next Wednesday morning. I’m thrilled that we are finally getting in to see the PT and thankful that Becky likes us enough to help us out. I mean, help us more than she does already. 🙂
Now for the fun part with all the pictures. Lots of people have wondered what snack therapy is, since most of us come by snacking honestly and snack to relieve stress rather than having it cause the stress.
We do snack therapy because Jake’s little brain and body doesn’t process food the right way. He doesn’t chew, lick his lips when he gets food on them, swallow the right way and is pretty much terrified of food in any form but purees. Even though he’s almost two he’s never fed himself as he’s scared of getting stuff on his hands. Since anything larger than the tiniest star pasta causes serious problems, I’ve had to puree all of Jake’s food since he started eating. I doubt that many college cafeterias are going to include a blender in their meal options, so we are working pretty hard to get him over that. Snack therapy is pretty much one big desenitizing process with the hope that in many more months, he’ll be eating normally.
This is a typical tray of food I prepare for Jake’s therapy.
The foods on the left-applesauce, teething biscuits, pretzel sticks and beef jerky are all “safe foods” or foods that Jake is not afraid of. The food on the right-oranges, waffles, puffed dried bananas, chicken sticks and syrup are all foods that Jake has yet to be okay with. We also have bubbles and a wet towel for Jake and myself as well as soapy water. I use the towel on the left to cover the whole thing up so that Jake can’t see it and get stressed out by what’s coming.
We start out blowing bubbles.
Blowing bubbles is really fun (even though, as Grammie can vouch, bubbles were terrifying to Jake when we first started). It gets him laughing, relaxed and we work on him touching the bubbles, popping them, and blowing them.
Then, we move on to cleaning the table with our soapy water.
It took Jake several weeks to be okay with touching the bubbles on the table, but he helps me clean like a pro.
Then, we wipe the table clean and play with the towels for a minute.
Here, we are pretending to be puppies and growling at each other. Everything we do in snack therapy has a dual purpose. It has to be fun, or else he won’t do it and it also has to serve a greater purpose. The thing we are actually doing here is getting him okay with biting down on something with his front, back, and side teeth.
Next, we move on to our foods.
Our rockets/beef jerky blasts off into outer space. Jake needs to learn that touching food is okay and this has helped.
Our beef jerky trains “chugga chugga” up and over our heads, while helping Jake realize that getting food near his mouth isn’t as bad as he thinks it is.
We sneeze our teething biscuits off of our heads. Okay, that one is just because Jake’s version of a fake sneeze is “A-koh!” and it makes me laugh.
And, sometimes, Jake gets stressed out over our fire engine waffles and starts doing strange things to keep from touching what’s on the table. In this picture he’s pulling his ears. Other times, he gets fascinated by an imaginary spot on the wall or just has to figure out what is holding his chair together. But, after a while of distracting himself, he calms down enough to come back and do some more work.
The next section of his snack therapy gets a little more difficult.
Here, he is painting with teething biscuits in syrup. How’s that for a painting medium? I’m trying to get him to touch sticky or wet things with his fingers, but we’ve only been successful at that a few times. However, in the alternate reality of therapy, touching a sticky thing with a stick is still considered “touching” it since he’s engaging it. So, we’re very much on the right track.
Inevitably, his fingers DO touch something and then we have to work on being very calm and quiet and slowly and gently getting the sticky thing off his fingers.
And, with lots of teaching, sometimes, he can do it all by himself!
And every once in a while, the therapy will pay off and Jake will actually take a bite of something new and scary.
And then, there is great rejoicing!
We work and play pretty hard for about twenty minutes and then it’s clean up time.
While snacking is a fun thing for most people, me included, it’s been challenging for my little monkey. But, I am so proud of him and for all the progress he has made. We really are getting closer to the day when he can say, “Mama, I can do it all by myself!”.